Friday, February 25, 2011

I'm so glad it's Friday night. Crazy week: snow and wind and crazy cold; friend with a newly acquired TBI (mild, thank God); Q was flagging; slippery roads overwhelmed by very rapidly falling snow; more medical thinks to think; weather reminding me of a different place we used to live; my mom's recouping.

Q seems to have popped back nicely. It'll be warmer tomorrow and the roads are bare and dry now. There's lots of good info out there about TBI and said friend is taking appropriate measures.

I am excited to share that Q's PT peeps are looking to nail down another hour every week specifically for power chair training. Yay! Tangentially, this brings up a concern of mine: could we all pray that the gas prices drop and stay down for awhile? I'm having a heck of a time trying to figure out how to manage the strangely fast-growing expenses. Food is suddenly significantly more expensive too, and if we're about to be driving more miles... Well, it brings a little shudder.

Deep breath and on we go, then.

I had another conversation with the pediatrician and we are looking at a referral to urology for a possible procedure. She's noncommittal about the likelihood of such a thing, but in case youre keeping score at home, we're now up to four surgeries that may need to take place sometime in the next twelve months. May need to. I can always freak out later. For now, I'll get the next appointments scheduled and see what the docs have to say.

Here's hoping that your week-end provides basis for a good week-beginning. Share some extra hugs around, maybe. It's been a brutal week for some of the people and we could all use a little extra tenderness, right?

Wednesday, February 23, 2011

Q will see a nurse for a skin management protocol on Monday. He's fine at the moment, but has had abrasions over his vertebrae and scrapes on his hands. Everyone who works with him is pretty careful, but still. Good to have the professional input and then a plan.

Meanwhile, I've reserved the right to puke in the backyard at any time, without warning. What can one say? I can't think too long about the prospect of multiple procedures, or even one of 'em, without getting ridiculously light-headed. Not so great. Still! It is good to have a plan, no?

Saturday, February 19, 2011

Q and I traipsed up to his orthopedics appointment this morning while his sibs headed off to violin/viola lessons with the Magnificent Auntie. I like the orthopedist, though I could (have I mentioned this already?) go the whole rest of my life without hearing another call pager going off. Twitch.

So here's the deal.

The films show Q's left hip subluxed at 60% or more, and his right moving out more than it was this time last year. More important is the fact that his hip sockets were more bowl-shaped last year and more saucer-shaped this year. This is a pretty solid indicator that he'll need to have surgery at some point. The benefits to going ahead sooner are many. Kids who don't have surgery until they're in constant pain, usually around 14-15 years of age, are really only candidates for resection of the head of the femur at that point. People who are ambulatory with typical tone can have resected femurs and continue to walk because they have lifetimes of good muscle built in that area. People who have atypical tone cannot expect to stand or walk again after a resection. Period.

There's a significant study out of Australia regarding pain in hip dislocations. Not all children with dislocated hips have pain, and some surgeons argue against surgery in any cases who do not have constant pain (see above example for why we would not want to let things get that far). Interestingly, children who attempt to be engaged - verbally, vocally, or otherwise, suffer pain with hip dislocation at the rate of nearly 100%, whereas children who are less able or interested in being socially engaged, do not. This appears even when other factors are controlled. The orthopedist indicates that the hypothesis suggests that it has something to do with hardwiring and development, much more than with communication. Striking info, there. He says that Q falls firmly into that category and he would expect that Q's having some discomfort now (recent developments seem to indicate this), and will eventually have severe pain if untreated.

The surgery is not an emergency. There is a window of eighteen months to two years, and Q's scheduled for his next x-ray and ortho consult in early August. In the meantime, while the orthopedist would certainly not suggest that we look at a Baclofen pump for the purposes of the surgery, but because it's already a consideration, he'd be on board with it as a good next step, which will also provide further post-op tone and pain management opportunities. PTs, OTs, and Q's rehab doc all concur, so the rehab doc has put in a request for a referral to neurosurgery to discuss intrathecal Baclofen. One of the benefits to Q having a pump placed for this is that he would be able to take much smaller doses of the Baclofen. He's currently at the max dose for his weight, 20mgs, 3x/day. The lumbar test dose (which is exactly as notsimple as it sounds) is a 50mcg push, or bolus, delivered in the space of a few minutes in order to gauge particular effects. The daily dose via intrathecal delivery is 100mcg, spread out over 24 hours. The lower dose, delivered directly into his spine, allows it to bypass his liver, which would eventually begin to show toxicity with the high oral dosing. Also, any residual sleepiness goes away with intrathecal Baclofen. He hasn't had much of that, but it would be awesome to see him more alert.

Q has built quite a bit of actual muscle in the last year, since beginning Baclofen. With the tone pushed back a few paces, he can build actual muscle, and he has. He's long and lean, like his paternal set of genes, but there's definitely real muscle in there and he uses it well.

There's so much more to tell. The ortho guy is unbelieveably detailed (which makes my busy brain so happy!), and cited the aforementioned compelling study several times as being the best current source of info on kids with spasticity and hip dysplasia. I'm sure I'm leaving out almost as much as I put in, so pardon me if I revisit to add details over the next couple of days. Another decent source of info.

I'm exhausted. How 'bout you? Hoping sweet things for you this weekend. Next up for Master Q: endocrinology and dental clinic.

Friday, February 18, 2011

Q has had an interesting run with professionals lately. Tuesday he saw his pediatrician - all is well, though my definition for such things may not be the same as that of the general population. He hasn't used the nebulizer this season (fingers crossed), his skin is unbroken (except for the self-inflicted scrapes and bite marks on his hands), and he's happy. No small thing, that.

Today his new caseworker from the Department for Developmental Disabilities spent three hours here, doing the initial intake interview. How much help does he need dressing? Managing grooming? How about feeding? In learning and play activities? I think the more effective question would be: what doesn't he need help with? It would certainly have made the whole process shorter. Heh. I have no idea what the expectation should be for the outcome with this evaluation. The caseworker will return tomorrow with the completed plan so we can have the option for care coverage for the month of March. As of today, the estimate for care hours is 86.

I have two reactions to this. First - thank heavens that there's an option for this. At all. I may choose to have someone spend the night to turn Q and reposition him, should he awake, between the hours of ten and six once or twice a month so I can sleep. I can think of other very useful applications for this as well. This poses such a huge blessing that contemplating it makes me a little light-headed. I'd be giddy if I were less tired. Second - so, um, let me get this straight. It takes eighty-six hours a month to care for Quinn? What? No comprende. Eighty-six hours? In what context would this be true?

The caseworker is a very nice man. He spoke of his own experience helping to care for his cousin who had severe and complicated CP. He said that I'm doing an excellent job (blush) with a very time intensive and exhausting situation. He found Q's smile engaging, touching, beautiful. He considers the result of my efforts and my knowledge of Q's specifics, as well as the human body generally, to be remarkable. He's spending some time tomorrow morning going over the notes to fine-tune Q's profile and will return the final results to me quickly, so that we can get this moving, as I mentioned.

Eighty-six hours. I'm guessing that this means that an algorithm has decided that a typical five year old requires eighty-six hours less care than Q? When the nice man asked about the biggest needs for Q, I told him that our challenges here right now center around the fact that Q, himself, is a full-time endeavour. Add in the medical and therapy management and administrative issues, plus his sibs, and suddenly there's more to do in a week than I can realistically complete. For example, we still don't have window coverings up. Deep breath.

And yet. (You knew I had one of these, didn't you?)

The kitchen is pretty darn clean, though a crevice tool would be welcome under the edge of the stove. The whole house was vacuumed yesterday, including many of the baseboards. The kids are excited about their Greek temple models. Everyone is making some kind of measurable progress in learning. The bathrooms are pretty darn clean, though I suspect G's shower could use some scrubbing. The ubiquitous boxes are becoming less so. There are pictures on some walls, and slowly, steadily, more things are finding their homes in shelves.

Q has an orthopedics appointment at nine tomorrow. Both his therapy center and school PTs as well as his OT would like to see the lumbar testing and possible placement of the Baclofen pump before any potential surgery. Management of both pain and spastic tone would be much easier post-op with the pump, resulting in a vastly better experience for him. (Head between the knees... hating the prospect of all this...) I'll have more info tomorrow about all kinds of stuff. Knowledge is power. Tra la.

Three Good Things:
My shower squeegees. Such effective little tools, and they make less work for those cleaning the showers. Win!
Things I've learned over the years from certain people, some of whom you might not suspect I'd include in a gratitude list. Thanks to those people, I have encyclopedic level stuff in my head, and it ends up being useful in all kinds of situations.
My kids, the punkinheads. They're smile-inducing, work-creating, attention-deserving, organizationally-motivating, daily challenges, in all the right ways. They prod me onward, require that I be brutally and painfully honest with myself, and they bless me incomparably. All at the same time.

Saturday, February 12, 2011

I have only a few things on the floor in the living room, after trying to organize all of Q's stuff into a garage sale bookcase - fifteen bucks for oak with deep shelves. Cool, huh? The remaining items may not make the cut. The parts still stymieing me are the "extra" bits for his chair and walker, the spare pads and such. Some can go into a box on top of the shelves, others may need to live in his closet. Closet. Swoon.

Have we discussed my favorite things about this house? First, the closet which Q is making good use of. Apparently it's a "his" closet, being off the master bedroom and all. Heh. Most of his supplies are in there and I'm so glad to have it. Second, the main floor bath and bedroom. Modifications needed later, but if he isn't able to negotiate stairs at all, or a lift plus a few steps cannot be managed for him in the future, he still has his own accessible bedroom (which was maybe supposed to be a massage room, but unless you call me, when in the world would I manage to pull that off? The word "busy" comes to mind.). Third, the front steps are at precisely the right height for Q's chair to be lifted in and out without so much back strain. Fourth, the hallways are wide, so we can get the chair around inside. Fifth, the bar/counter with five stools all lined up - working on the adjustable base idea for Q so he could join us there. Sixth, I have three closets here not associated with anyone's bedroom. The entry closet, the hall closet (near the garage entry), and the linen closet upstairs. The storage and the wall space (unpacked the paintings) just blow my mind. Now to get curtains on any of the rooms besides my bathroom window... There's a great view of the sunrise over the mountains, but it is awfully nice to shower in the light. Same view through my bedroom window - awesome thing, to keep watching sunrises over the snow and trees. Wow.

Q has an appointment with ortho next week. It was then or wait until late March or late May, so we're going with this option. I'm waiting to hear back about dentistry, which I'll tell more about when I can hold my eyes open. Yikes!

Saturday, February 05, 2011

So about those medical appointments. Q saw a rehab doc this week at the Children's hospital. She watched him walk and was quite engaging with him, and he with her. She sent us off for x-rays and then sat down to discuss the findings.

Last year this time, Q's left femur was about fifty percent subluxed, or "out" of the hip socket. This year it's about 2/3 out. The plan for now is to get consults scheduled with ortho and neuro-ophtho and think about when to have surgery. If it's indicated (and it surely will be at some point), the surgeons may be willing to do both hip and eye corrections at the same time, in part because I'm trying to be mindful of Q's lifetime chances of needing general anesthesia; it's just a good idea to manage these things if one has that option. However, the hip surgery is longer and so that may rule out any other simultaneous procedures.

Q is on a four day titrating plan for Baclofen - going up to the max dose for him at this weight and height: 20mg, 3x/day. We'll talk in a couple of weeks, his newest doc and I, and she may at that time opt to add a tiny dose of a benzodiazepine during the day to hit the receptors that the Baclofen does not. Things that would indicate he's not doing well on the new dosing of Baclofen: increased sleepiness (beyond the usual 48 hours from a newly increased amount), increased drooling, any sort of sustained decline in function. It's pretty typical for him to have had that initial sleepiness, I haven't noticed any change in drooling with these meds adjustments, and any change in function has disappeared within a couple of days, as he wakes up and goes on to build more muscles as the inappropriate tone subsides.

Good things I know now that I didn't know before: he's 37 lbs and 42 inches. He's growing! Yay!! This new doc is not opposed to placing a Baclofen pump sooner rather than later - hopefully skipping past the potential liver toxicity which can be seen in kids who've been on their maximum dosing for years. She also thinks he needs to have AAC as soon as it can be managed and a wheelchair he can drive, baby! (I'll be needing the remote cut-off switch for when he decides he can safely drive himself right up into the mountains, thanks.)

AAC: Q has been on a wait list for more than a year. I just discovered this. Since he already has speech therapy (for feeding) he had to go through the whole wait list thing again. In the meantime, thanks to all you kind and lovely people (you know who you are), he has quite the iPad cache of games and goodies. His fave, so far? The free "Yes/No" app - he can answer yes/no questions easily and loves it so much that we're about crazy from it. In a good way. You know.

Motorized chair: We've had a "starter" version - ancient car seat with motor and wheels plus a button for him to push to make the chair go. The incredible noise, which probably violates city ordinances, has been, how to say? Offputting. For Q and for the rest of us. The very good news - his PT thinks he may be big enough now for some of the demo options they have on site. Or I hope they have them on site.

More good news today: Q has a caseworker through the Department of Developmental Disabilities! And the guy is coming out to the house on the seventeenth to do an eval and get the ball rolling for paid care hours! YAY!!! And also? It has only just occurred to me that now I need to come up with people to actually be certified and to provide the care. Preferably by March 1. Another action item for the list, then.

I'm not so much enjoying the prospect of Q having this surgery. The cutting and stitching up and recovery and more meds and pain and casting and general discomfort and wow, could we skip this and I'd be fine. However. If the rehab doc is correct, and I believe she is, changing that angle between the trochanters and heads of the femurs plus good management of tone should equal a real change in the trajectory for Q. He will likely be far more comfortable in nearly any position, he should stand straighter (a very real issue for him as he's trying to work while upright), and most importantly, it removes much of the worries going forward that one often has about kids who are experiencing such a painful presentation - including joint and bone integrity. Will this help him walk? In so far as he's already able, yes. (Try walking with your knees turned inward and clonking each other.) But the goals for Q mean that currently his mobility and any walking/standing/sitting issues are separate. He'll need his independence, as much as he can gain, and that will be with motorized wheels. If he can eventually step up a couple of steps at a time, with help, and assist in transfers, I will be ecstatic. Truly. These things would be huge. Would I like for him to walk? You betcha! And if he does, great! But I'm not tied to that as a marker for his success. Q's success will come out of the fact that he's a hard worker with a great smile and an even better attitude. All that he brings to the table coupled with excellent therapists who are committed to figuring out how to get him out so he can play, talk, tell us what he wants us to know about him, will define how far he can go. The sky's the limit.

I know I've forgotten a thousand things, so I'll pop back and issue addendums when I can. I'm headed for sleep - such an utterly exhausting week. I've pushed off considering the logistics of all this for now (spika cast, transporting kid in cast, etc.). Plenty of time to attend to that when I've got more info. No sense borrowing trouble when it's already quite interesting, living here.

I so hope you're looking forward to a lovely weekend, all. More apologies from me re: being so ding-donged out of touch. I'm even sorrier that it appears there's no end in sight. Hey - I'm issuing a standing invitation to come help me scrub down Q's equipment. I could seriously use the extra hands here and we can chat! Whaddya say?

First time here?

Me

I'm mothering five gorgeous, perfect children, and homeschooling three of them. I am one of the best-blessed mamas in the universe. Oh and -- there's the small matter of neuro issues here. I suspect that somehow the littlest one's Special Needs behave as some sort of condenser that delivers unusual configurations of Rainbows, Butterflies and Bliss, right in the midst of the ubiquitous and itinerant crazy bits. So we have some stories to tell.